Guest guest Posted December 9, 2002 Report Share Posted December 9, 2002 That's a great question, although its rare to have regression, I think for the most part once your child graduates, your so alerted to what can happen that you find yourself still repositioning or at least worrying about it enough to make sure they are not spending increased amounts of time on the back of their head- even though most are old enough and are mobile all day. It's really not a concern, but its something you find yourself worrying about anyway ) ' Mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2003 Report Share Posted April 4, 2003 Hi You are best to test through DDI - www.doctorsdata.com they need a doctors order, Do DC will do. If you don not have cooperative Dr then you can pay a little more and use www.directlabs.com - alwasy ask for DDI ELEMENTAL Hair Test (not toxic) . I will sned you some links off list HTH Mandi in UK > I have been learning so much reading all the posts these past few > days. Thanks so much! I did see one post that sparked interest for > me. The one about hair testing for mercury/metals. My family has > suggested several times that I have my DS tested for this, but I > don't now who does it. Surely not a regular pediatrician!? Rather > new to our area anyway, I don't yet have a regular Dr. at this > point. Can anyone lend direction? Thank you! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2003 Report Share Posted April 4, 2003 > Hi All! > > I have been learning so much reading all the posts these past few > days. Thanks so much! I did see one post that sparked interest for > me. The one about hair testing for mercury/metals. My family has > suggested several times that I have my DS tested for this, but I > don't now who does it. Here is my overview page, which gives information and links for the hair test and other issues http://www.danasview.net/chelate.htm Dana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2003 Report Share Posted July 25, 2003 Hi Deidre:That's something you would have to ask your orthotist, but they are rarely used. I've read of a few babies wearing them, but not many. The sweat will be the worst for the first few days or so in the band, then after that, 's body temp should adjust to the band on top of his head, and the sweating will significantly decrease. He'll likely still sweat, but not super duper bad. Fall will be here before you know it too, so that'll help w/cooler temps. Debbie Abby's momMIBlondee10@... wrote: My mom was thinking about fashioning some "skull caps" for to soak up the sweat on hot days. Is this not recommended or would it be okay?Deidre Piechocki's mumKentwood, MISTARband: coming soon to a noggin near you! For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2003 Report Share Posted July 31, 2003 Hi Oona, Just wanted to welcome you to the group! I know you've already gotten some great responses about your question, and I think you might find a lot of information in our files section, as well as studies done on www.plagio.org Good luck! 'mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2003 Report Share Posted August 28, 2003 At 09:43 PM 8/28/2003, you wrote: >Hi again, I forgot to mention in my other post that they want hubby >to have an uptake and scan. Is this a dangerous procedure and is it >necessary? The endo told hubby they want him to have it so that >they can see how bad his goiter is. Unnecessary. He should have an ultrasound, to see if there are nodules. >Also, if we try to fix his HyperT and goiter with vitamins and diet >only, what timeframe should we give it to know whether it is working >or not? The Endo said that he wants to put hubby on Tapezol or PTU >and that he'd need to be tested 6 weeks after. I would have a test in 3-4 weeks. > Would the vit >regimen take longer than that? Yes. And not advisable to use vitamins alone (see previous post). Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2003 Report Share Posted August 28, 2003 Oh, and the RAI-U scan is only used these days to determine the dosage for RAI. It is outdated and unnecessary for diagnosis. In addition to the thyroid tests (Free T3 and Free T4) and TSH, the proper tests for Graves' are TSI antibodies and an ultrasound. You should also have TPO-Antibodies tested, as they are also commonly found with Graves', and it is good to have a baseline. Before ATD therapy, you will want to have a CBC (WBC in particular) and liver function tests. WBC should be tested every 4 weeks, with thyroid levels. LFT should be repeated at 4 weeks, 8 weeks, and every 3 months. Best wishes, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2003 Report Share Posted October 21, 2003 Are you wanting a bag to contain 2 g of MgSO4? If so, just figure out how much 50% MgSO4 equals 2 g. 50% means 50 g in 100 ml. That translates into 5 g in 10 ml. Which would be 1 g in 2 ml. So to get 2 grams of MgSO4 from a 50% MgSO4 solution, you need 4 ml of 50% MgSO4. You don't need to know the size of the bag to figure out how many ml's you need to get 2 g. Della Cat Haven, Inc A No-Kill Cat Rescue Houston, Tx www.cat-haven.org another question What amount of 50% Magnesium sulfate solution should be injected to prepare an IV bag containing 2 g MgSO4? Help! Thank you. 50% means 50g/100mls ; how do I know the size of the IV Bag or are they standard at 500 or 1000mls? Thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2003 Report Share Posted December 8, 2003 I put my daughter in a regular kindegarten last year. My thoughts were that if she failed, we could always put her in a special ed class. She did well in kindegarten, and she is now in a regular fist grade class. I already know she'll be in a regular 2nd grade class for next year. was right on academically, but she was really delayed speech wise. She also had some problems with her fine motor skills. She has a November birthday, so she was one of the older kids in her class. Good luck! Suzi --- In , " Dena " <warners3@h...> wrote: > My daughter will be turning 5 in February and will be headed to > Kindergarten next fall. My concern is whether or not she will go to > a regular class or to an ESE class. She is only speech delayed and > is right on target for all of her other skills (will need to keep a > close eye on reading skills as they develop though). I have been > told by other mother's in my area to NOT let them put her in the ESE > class because it will be very hard to ever get her out and into > mainstream. I think it is an option to have her in a " normal " class > but then she would be pulled for speech 3 times a week during > school. I am really concerned now because she is in the preschool > program and is with other children that do have delays in other > areas, some are much younger than she and some have behavioral > problems that I am worried she might pick up just to get attention in > class! She has progressed quite a bit there and her speech is > improving but still so far behind. > > I am struggling with myself and if is she in the right place even > now. I have an appointment with a private school and a Montessori > school this week but I don't know if they can really give me the > answers I am looking for. I don't know who can! > > Thanks for any info you can share! > > Dena Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2003 Report Share Posted December 9, 2003 Dena, Any other placement that the regular classroom would NOT be appropriate for your child. Do not let them place your child in any such program. There is something called LRE (least restrictive environment) that comes into play. If speech is the only delay, she NEEDS typical peer models ..and she does NOT need to learn atypical skills from peers. The IEP team must take your daughter's individual needs into account when discussing placements. You as a team will weigh the pros and cons of each placement and then decide which you agree as a team would be best. There is also something called the Holland Decision which came out of the 9th circuit court that can be useful in arguing placement. It is a four prong consideration 1) the academic benefit to the student 2) the non-academic benefit to the student 3) teacher time on the student and 4) cost although it is said that cost alone is an unacceptable reason to place a child. The biggie is that the student cannot take an unreasonable amount of a teacher's time as obviously there are many children that need to be educated in the classroom. Even if you aren't in the 9th circuit, you can still think in those terms in presenting your argument to the team. Perhaps you won't have an issue at all...many school districts would assume inclusion. If you tell me which state you live in I can send you the contact for your state's parent training center. You may also be able to find it by doing a search. I know when I type " Oregon Parent Training and Information Center " in my agency's site pops up. Now you can all run there and see my pic if you wish. Blah! They do free trainings on the IEP process and also provide technical support and assistance. I'd strongly encourage you to attend some of these trainings. I am assuming your daughter is still in ECSE this year? You will have transition meetings...make sure when you have an IFSP meeting at the early intervention site that someone from your school district is present. And when you have an IEP meeting at your local school, make sure your daughter's case manager from ECSE is there. If you decide to approve an IQ test for your child, make sure it is a NONVERBAL one, I believe it is called the MacCarthur. I did this with my daughter and she had a 116 IQ on it. That ended ALL discussions of any other placement than the regular classroom right there. And I had been fighting them BIG time until the psych read that result. Don't worry, you've started at the perfect time to start educating yourself for next year! Tammy [ ] Another question My daughter will be turning 5 in February and will be headed to Kindergarten next fall. My concern is whether or not she will go to a regular class or to an ESE class. She is only speech delayed and is right on target for all of her other skills (will need to keep a close eye on reading skills as they develop though). I have been told by other mother's in my area to NOT let them put her in the ESE class because it will be very hard to ever get her out and into mainstream. I think it is an option to have her in a " normal " class but then she would be pulled for speech 3 times a week during school. I am really concerned now because she is in the preschool program and is with other children that do have delays in other areas, some are much younger than she and some have behavioral problems that I am worried she might pick up just to get attention in class! She has progressed quite a bit there and her speech is improving but still so far behind. I am struggling with myself and if is she in the right place even now. I have an appointment with a private school and a Montessori school this week but I don't know if they can really give me the answers I am looking for. I don't know who can! Thanks for any info you can share! Dena Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2003 Report Share Posted December 10, 2003 Tammy, Thank you so much for you post. I really need all the advice and guidance I can get right now. I am just worried sick wondering what is " right " for our daughter. I don't want to be in denial but then I don't want her put somewhere she doesn't belong. My daughter was tested for IQ and was at 125 without language and just recently tested again at 109 with the language delay included. But since she cant get the words out and seems to have a " processing disorder " per her teacher who I am trying to educate....... she is feeling that Madison wont be able to function properly in a regular classroom of 20 something kids. It is hard for me to accept that! Especially since she is basing the classroom setting on HER classroom that consists of kids from 3-5yrs old with different delays and behavioral problems. Madison has started to become quite defiant at school and I feel that she is bored, doesn't like " nap " time (hasn't napped in 3 years!) and maybe picking up some of the younger children's behaviors for attention. Some of them require it due to their sensory issues but Madison does not. I think she would do better if she was with her own age group. We are in Florida and our county does not have different classrooms set up for the different type delays. Of course there are different classrooms for severely handicap children. I just want to help her as much as possible to get her ready for the right kindergarten class for her. Thank you so much for your information! Dena Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2003 Report Share Posted December 10, 2003 Dena, I will interject my comments throughout your post. [ ] Re: Another question Tammy, Thank you so much for you post. I really need all the advice and guidance I can get right now. I am just worried sick wondering what is " right " for our daughter. I don't want to be in denial but then I don't want her put somewhere she doesn't belong. I fully agree and you're doing a great job! My daughter was tested for IQ and was at 125 without language and just recently tested again at 109 with the language delay included. But since she cant get the words out and seems to have a " processing disorder " per her teacher who I am trying to educate....... she is feeling that Madison wont be able to function properly in a regular classroom of 20 something kids. Have you had an outside evaluation done to get another opinion of whether Madison has a processing disorder or not? The teacher may (potential though I'm not buying her expertise if this is a regular classroom teacher diagnosing her (making that statement) may have a valid point BUT and this is important, they MUST try the regular classroom with full supports and services BEFORE they can say that it isn't working. Your daughter hasn't even had a chance to prove them wrong. Now districts are quite good at skipping this part (the full supports and services, esp. when it means hiring an aide) but none-the-less it is a vital consideration that the federal government thought was important enough to include it in IDEA. Now another thing, was this a regular teacher who is saying that Madison has a processing disorder? I will have further comments if it is. It is hard for me to accept that! Don't accept it....it's not ok to put her in a restrictive environment without giving her the consideration of a regular placement. If they try, write a letter and ask for an IEE (independent educational evaluation) by an outside source. Personally, when my daughter faced this last year, I would not have hesitated to file for due process. I wasn't even asking for an aide for my daughter because I knew she'd be alright but the fuddy-duddy principal wasn't really educated well enough or caring enough to work through this. I asked for a district faciliator (I'm in a large district where they have 5 people who do nothing but facilitate IEPs) to attend and he was quite helpful in helping us work this out. I also had the EI SLP and the district SLP backing me saying that they strongly urged MiKayla to be in a regular classroom. After getting an IEE if the team still is unwilling I would file a complaint with your department of education. This is a crucial issue for your daughter. Especially since she is basing the classroom setting on HER classroom that consists of kids from 3-5yrs old with different delays and behavioral problems. Madison has started to become quite defiant at school and I feel that she is bored, doesn't like " nap " time (hasn't napped in 3 years!) and maybe picking up some of the younger children's behaviors for attention. Some of them require it due to their sensory issues but Madison does not. I would document this as it could obviously be her modeling her peers which would be another strong argument for inclusion. I think she would do better if she was with her own age group. We are in Florida and our county does not have different classrooms set up for the different type delays. Of course there are different classrooms for severely handicap children. I just want to help her as much as possible to get her ready for the right kindergarten class for her. Thank you so much for your information! Not a problem! Have you tried looking for your state's Parent Training and Information Center? Every state has one. They offer free training to parents on issues such as Transition to Kindergarten. If you need me to, I can track down some Florida contacts for you. In fact if you want to connect with me privately, email me at tammys_mms@... (my business addy) and I will mail you some information. Tammy Dena Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2004 Report Share Posted January 6, 2004 Hi, . Yes I think you will notice more stiffness and swelling in the morning. Or towards evening. My son's ankles and feet were always very stiff first thing in the am, then after his morning shower would feel better. It is still that way when he is flaring - which thanks to the MTX is not that often now. What you are describing is how my son was until we got the jra under better control. Good luck, Michele (16,pauci & spondy) another question Another question... Paige has an appt next wed, so we're just waiting until then. I've noticed that her hand swelling is the worst in the morning and then it's almost gone during the day (her middle fingers are always swollen though) and then it starts to get worse in the evinig. It also seems to get bad if she's been playing outside in the cold all afternoon. Often she'll wake up in the middle of the night crying and lifting her hands to us. Have any of you noticed this? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2004 Report Share Posted June 27, 2004 No, I don't. Did the archives suggest a connection? Elaine Friends come and go, but relatives tend to accumulate. Hello Flutterbee On Sunday, June 27, 2004, you wrote > Seems like i have so many questions... i am going to the endo Thursday at > 9:00 and am concerned that he will want to do proceedures that are not > acceptable to me... (been reading in your archives) > Also, i have little lumpy nodules(sizes of small marbles or split peas) > vary in size ...from my wrists to my underarms on the inside of my arms, and > have not thought too much about this, as my dad had what he called fatty > tumors and are not malignant... but, since finding out that i have > hyperthyroidism, now i wonder... does anyone in the group have this, too...? > Scooter Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2004 Report Share Posted June 27, 2004 No, they did not, at least, what i read did not mention a connection... Flutterbee Re: another question > No, I don't. Did the archives suggest a connection? > > Elaine > > Friends come and go, but relatives tend to accumulate. > > Hello Flutterbee > > On Sunday, June 27, 2004, you wrote > > > Seems like i have so many questions... i am going to the endo Thursday at > > 9:00 and am concerned that he will want to do proceedures that are not > > acceptable to me... (been reading in your archives) > > > Also, i have little lumpy nodules(sizes of small marbles or split peas) > > vary in size ...from my wrists to my underarms on the inside of my arms, and > > have not thought too much about this, as my dad had what he called fatty > > tumors and are not malignant... but, since finding out that i have > > hyperthyroidism, now i wonder... does anyone in the group have this, too...? > > Scooter > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2004 Report Share Posted July 30, 2004 It varies widely. They have not been able to draw any correlation between alt/ast counts and amount of liver damage, or viral load and amount of liver damage. That's why they usually want a biopsy. -dz-Rhonda <rhondahudson@...> wrote: How long do you suppose a person has to have Hep C before there is damage tothe liver? Or does it vary from person to person?RhondaBEGIN:VCARDVERSION:2.1N:Hudson;RhondaFN:Rhonda HudsonEMAIL;PREF;INTERNET:rhondahudson@...REV:20040730T164428ZEND:VCARD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2004 Report Share Posted July 30, 2004 How frustrating. I ask because as near as I can figure I was probably infected a good 25 years ago. That seemed a good amount of time for this stealth disease to do some damage. And here I have no damage but some inflammation. Curious. Rhonda Re: [ ] Another question > It varies widely. They have not been able to draw any correlation between alt/ast counts and amount of liver damage, or viral load and amount of liver damage. That's why they usually want a biopsy. -dz- > > Rhonda <rhondahudson@...> wrote:How long do you suppose a person has to have Hep C before there is damage to > the liver? Or does it vary from person to person? > Rhonda > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2004 Report Share Posted December 29, 2004 I don't know how many have gained weight. I have. I went from 100 lbs to 140 lbs in about 6 months - prior to treatment. Since RAI I have steadily gained 4 to 5 lbs a year. Sometimes I lose a bit but it seems to be a difficult aspect of this disease for me. You could look at http://www.thyroid.about.com/. I know that weight gain is frequently discussed there. Kate another question How many people who have graves diease gained weight? and if so How long does it take before you can work on losing it? Also how many people actually get the eye disorder? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2005 Report Share Posted January 23, 2005 Janet, I am sorry to hear that your daughter is still feeling so poorly. I am sure that Monday morning can't get here soon enough for you. I am surprised that your ped doesn't have an answering service for on- call needs. My daughter also has migrating joint pain. It will often travel from her knees to her ankles. She rarely ever has had swollen or warm joints. She does get swollen lymph nodes in her neck along with sore throats whenever she flares. As far as the hot/cold thing. This seems worse with Aundrea when she is on prednisone or following mtx medication. Last night she kept getting hotflashes at the basketball game and would go stand outside in the cold (15 degrees here) and then come back inside. Later that night she was cold and wanted to wear her coat in the house and slept inside her sleeping bag. Perhaps your daughter fever is causing the hot/cold problems. I know they say that jra isn't suppose to be genetic but I personally have my doubts about that. In our family I have hypothyroid, so does my mom, my nephew has poly jra my cousin has pauci jra, my sister has chrones diseases and my uncle has ra. All autoimmune disorders. I have read many other instances where relatives are afflicted with a related autoimmune disorder. I think it only should make it even more necesary to get your daughter seen by a rheumy given your own arthritis conditions. Some suggestions to offer regarding giving your daughter some pain relief until you can make something happen on Monday. 1) My daughter can live in a hot bath during flares. She eats in the tub, does homework in the tub, reads etc... It is often the only time she can have a break from the pain. 2) we use heating pads or warm up a rice pack in the microwave to put on painful joints. I have heard some people alternate with ice but Aundrea has always preferred heat. 3) I makes tons of fruit smoothies for Drea when she is in a flare. due to the sore throat its hard for her to swallow. If you have a blender just toss in some yogurt, splash of milk, frozen fruit, cool whip and some sweet n low. You can also replace yogurt and milk with o.j. if you want. By the way what is your daughters name? Please continue to let us know how you and she are doing. I hope today will turn out a little better. (drea 9 systemic)--- In , " janet " <janet3339@h...> wrote: > > DEAR ALL > I HAVE POSTED ONCE ABOUT MY 11 YEAR OLD DAUGHTER UNDER THE > SUBJECT " NEED HELP " ANOTHER SYMPTOM SHE IS HAVING, IS HOT AND COLD > ALL NIGHT LONG THAT SEEMS TO KEEP HER AWAKE ALOT....HAS ANYONE HAD > THIS TROUBLE WITH THEIR CHILDREN....IM NEARLY OUT OF MY WITS WITH > WORRYING....CALLED THE PED FRIDAY AGAIN AND AS USUALL HE DID NOT > RETURN MY CALL, I CANT STAND TO SEE MY LITTLE GIRL LIKE THIS FOR > ANOTHER MINUTE. LOOKING SO PALE, WEAK, NO APPETITE, NO > AMBITION....NOT TO MENTION THE FEVERS AND PAIN IN HER KNEES AND > LOWER LEGS WHEN THE PAIN MEDS WEAR OFF. IM CALLING THE FAMILY DR > MONDAY AND DEMANDING TO SEE SOMEONE THAT WILL GIVE US > ANSWERS...THANK YOU SO MUCH FOR ALLOWING ME TO VENT HERE....I TRULY > FEEL YOU FOLKS WILL UNDERSTAND. OH ONE MORE QUESTION, HER KNEES DONT > SEEM TO BE REAL SWOLLEN OR RED, JUST PAIN THAT TRAVELS DOWN THE LEG > OR GOES FROM THE ANKLE, ALTHOUGH I DO REALIZE THAT SOMETIMES KIDS > CAN HAVE A HARD TIME REALLY PIN POINTING HOW IT FEELS. THANK YOU > ONCE AGAIN > HUGS > JANET Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2005 Report Share Posted January 23, 2005 Dear Janet, What kind of arthritis does your child have? If you have already told us, please forgive me, sometimes I go thru the email pretty quickly. Could your child be having fevers at night if she is hot and cold? A joint doesn't have to be red and swollen to hurt. n often has joint problems without swelling. Pain is pain, it doesn't matter if there is swellling. Keep pushing for your child, insist on answers. (n, 16, systemic) ANOTHER QUESTION > > > DEAR ALL > I HAVE POSTED ONCE ABOUT MY 11 YEAR OLD DAUGHTER UNDER THE > SUBJECT " NEED HELP " ANOTHER SYMPTOM SHE IS HAVING, IS HOT AND COLD > ALL NIGHT LONG THAT SEEMS TO KEEP HER AWAKE ALOT....HAS ANYONE HAD > THIS TROUBLE WITH THEIR CHILDREN....IM NEARLY OUT OF MY WITS WITH > WORRYING....CALLED THE PED FRIDAY AGAIN AND AS USUALL HE DID NOT > RETURN MY CALL, I CANT STAND TO SEE MY LITTLE GIRL LIKE THIS FOR > ANOTHER MINUTE. LOOKING SO PALE, WEAK, NO APPETITE, NO > AMBITION....NOT TO MENTION THE FEVERS AND PAIN IN HER KNEES AND > LOWER LEGS WHEN THE PAIN MEDS WEAR OFF. IM CALLING THE FAMILY DR > MONDAY AND DEMANDING TO SEE SOMEONE THAT WILL GIVE US > ANSWERS...THANK YOU SO MUCH FOR ALLOWING ME TO VENT HERE....I TRULY > FEEL YOU FOLKS WILL UNDERSTAND. OH ONE MORE QUESTION, HER KNEES DONT > SEEM TO BE REAL SWOLLEN OR RED, JUST PAIN THAT TRAVELS DOWN THE LEG > OR GOES FROM THE ANKLE, ALTHOUGH I DO REALIZE THAT SOMETIMES KIDS > CAN HAVE A HARD TIME REALLY PIN POINTING HOW IT FEELS. THANK YOU > ONCE AGAIN > HUGS > JANET > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2005 Report Share Posted January 23, 2005 Janet, Sorry to hear about your daughter it can be so frustrating with our jra kids I know I'm not new here. A idea ya can try would be a heating blanket, I know with my son's they seem to take alot of hot showers/bath just to warm up and (soak the joints).Can I ask how long your daughter has had jra? Take care Teena & 15 janet <janet3339@...> wrote: DEAR ALL I HAVE POSTED ONCE ABOUT MY 11 YEAR OLD DAUGHTER UNDER THE SUBJECT " NEED HELP " ANOTHER SYMPTOM SHE IS HAVING, IS HOT AND COLD ALL NIGHT LONG THAT SEEMS TO KEEP HER AWAKE ALOT....HAS ANYONE HAD THIS TROUBLE WITH THEIR CHILDREN....IM NEARLY OUT OF MY WITS WITH WORRYING....CALLED THE PED FRIDAY AGAIN AND AS USUALL HE DID NOT RETURN MY CALL, I CANT STAND TO SEE MY LITTLE GIRL LIKE THIS FOR ANOTHER MINUTE. LOOKING SO PALE, WEAK, NO APPETITE, NO AMBITION....NOT TO MENTION THE FEVERS AND PAIN IN HER KNEES AND LOWER LEGS WHEN THE PAIN MEDS WEAR OFF. IM CALLING THE FAMILY DR MONDAY AND DEMANDING TO SEE SOMEONE THAT WILL GIVE US ANSWERS...THANK YOU SO MUCH FOR ALLOWING ME TO VENT HERE....I TRULY FEEL YOU FOLKS WILL UNDERSTAND. OH ONE MORE QUESTION, HER KNEES DONT SEEM TO BE REAL SWOLLEN OR RED, JUST PAIN THAT TRAVELS DOWN THE LEG OR GOES FROM THE ANKLE, ALTHOUGH I DO REALIZE THAT SOMETIMES KIDS CAN HAVE A HARD TIME REALLY PIN POINTING HOW IT FEELS. THANK YOU ONCE AGAIN HUGS JANET --------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2005 Report Share Posted January 24, 2005 Hi, Tina - We saw siginificant improvement in Josh's sensory and motor planning when we did the listening therapy last summer (a 16 week program). Our OT worked with us. She was trained in the listening therapy and arranged with her supervisor at the local hospital to purchase several sets of the therapy and then she handled it like a lendling library (with a small fee for parents) so that parent would not have to foot the bill for the headphones and CDs unless they saw results. Josh listened for pretty much the entire 16 weeks and then, nearing the end, he just took off the headphones and said, All done. He wouldn't put them back on. But, we're thinking about buying the headphones and 2 or 3 of the CDs for " refreshers " or for use at school. As for FasForWord - I've been looking into it - many people have seen amazing results. I found SLP sort of near me who works with it or can guide a family through its use. I'm also trying to talk her into giving a demo at our school to see if the school will foot the bill (they just got put on the warning list for math and reading - they're blaming the special ed students for lowering the numbers in the NCLB stats - not surprising). If you want more info on the listening therapy, contact me. Sherry tvs <tinavels@...> wrote: Does anyone know if the listening program or fast fowards are good ? Where to buy them, how much? Does a speech therapist have them? And does anyone want to sell theirs? Thanks for the input, tina Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2005 Report Share Posted May 23, 2005 I have yet to have surgery because the neurosurgeon I am seeing at UVA doesn't recommend surgery for pain alone because of the risks involved performing the surgery and the fact that pain can be worse after the surgery. This is applicable to thoracic surgery at T6/7 level. The ribs have to be cracked open, lung deflated, heart moved to the side just to get to the disc. From what I have heard, surgery should always be the last choice especially if pain is the major symptom and no other neurological factors are present. I have heard this is true of other area as well. I also know people who have had severe back problems and have been walking within 2 days of surgery at L4/5 and L5/S1. The resulting pain they describe is like a bad backache, nothing like he had experienced before. I am in plenty of pain right now and they are having a hard time controlling it using narcotics, muscle relaxants, antidepressants, Neurontin, and TENS unit. Even with all the meds I am taking, he still believes that this is the best course of action right now because performing the surgery may not relieve the pain. Once I started to exhibit neurological problems or caudia equina, then surgery is imminent. Unfortunately, I have had to stop working (companies decision) and will start collecting LTD in June. I also have to apply to social security within the next month. Personally, I would rather be working but with the pain, side effects and other problems starting to develop, I don't think I could work. The Lord has kept me strong to date along with my church family and friends. I wish both you and your mother the best of luck with her pending surgery and whatever treatment lies ahead for you. God Bless, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2005 Report Share Posted May 23, 2005 > Dana, I read your new baby link on the website--you mention your son > had IgA deficiency. I have never had my son tested, so that info must have been what someone else had written about their own child. Dana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2005 Report Share Posted May 23, 2005 , the degree of pain is still there and can be for up to 1 yr. I am 6 mths out and for the most part 70% of the time I am pain free. There are certain things that will aggreivate it, and then I just make a mental note of that and watch myself the next time. Unfortunatley when we start to age our bodies tend to go against us. <watermelanie@...> wrote:hi everyone, i printed out all the replies about surgery for my mom. we survived our trip. she's doing really bad today because of the car ride. part of me feels fortunate that my boo-boo is in my neck. my cervical discs just don't have to carry as much weight as a lumbar disc. i have a great neck pillow attached to the headrest of my car which makes driving pretty comfortable for me. anyhow, i didn't have too bad of a time with all the driving. it was probably easier on my neck than staring at a computer screen all day at work. so, on to my question for the surgery people. when you say that you still have a lot of pain after surgery, do you mean that you don't feel that much better or that you are just surprised at the level of pain that is still there? thanks melanie Quote Link to comment Share on other sites More sharing options...
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